Saturday, March 30, 2013

Treatment

Dear Friends of Chuck,

It’s been nearly three weeks since our last
post, and Chuck has just passed the mid-point of his radiation treatments at
New York Presbyterian Hospital. On
Friday, March 29, six weeks after his brain surgery, Chuck underwent
the fourth of six ramped up radiation treatments. With just two more treatments to go
next week, he is nearing the end of his radiation treatment, which typically
follows surgery. He chose a
short course of stronger radiation dosage rather than a standard six week
course. The docs were clearly delighted, as they have been
finding—anecdotally--that these shorter, more intense regimes, which involve
higher daily concurrent doses of radiation and chemotherapy, beat back tumor
progression more successfully than the longer courses. The choice seemed obvious to
Chuck—less time in the grip of allopathic medicine, better results. One could sense the doctors were
pleased with the choice as well: in
this notoriously difficult disease, every successful anecdote will eventually
turn into confirmatory data—statistics--that will improve outcomes for others.

For a man who couldn’t bear the idea of eating
in a Japanese restaurant after the explosions at Fukishima, the word “brave”
hardly covers what it must have taken to submit to the white coated radiation
specialists and technicians and their x-ray machine, not just once, but four
times in as many days in the past week. ABC-7’s
late afternoon news coverage, a fast-paced gallery of murderers, rapists, con
artists, spoiled celebrities and local politicians, provided extra resolve.

We arrived at the Stich Radiation Center in the basement of NY Presby with an
hour to spare, our hired car having sped through the park without encountering
traffic or the kinds of disasters we were soon to witness on the local news. With nothing to read, we fell captive
to the flat screen TV on the wall in the waiting room. After a two hour delay, Chuck noted that
radiation to the brain would be vastly preferable to the local news fare. Soon after, Chuck, visibly relieved
for his reprieve from ABC-7, was escorted to the radiation “suite” and asked to
don his fencing mask, as he calls it, with the black ink pin-points on it to
guide the radiation beams.

After
myriad warnings from medicos that the radiation might cause extra fatigue, the
surprising and happy outcome on Day One turned out to be Chuck’s enhanced
spirits and clarity of mind. Thirty
minutes later, he walked out of the hospital feeling energetic and alert. He was able to find his way out of the
hospital’s maze-like interior without once faltering, an I.Q. feat surpassing
most. He told the car’s driver to drop him at 89th and Broadway so he
could buy the makings of a sumptuous dinner at Gary Null’s Whole Foods, and
walked four blocks home with groceries in hand. Dessert was vanilla ice
cream with chocolate sauce and peanut butter; the steroids Chuck must take are
causing an irresistible craving for sweets.

On
Day Two, we took another town car through the park and talked about Laura
Nyro’s long ago wrongheaded decision to leave David Geffen’s management and go
with Columbia instead of following Geffen to Asylum. Which led to a
discussion of whether Clive Davis (of Columbia) was a visionary or something
less. Chuck’s view was that
Davis was hardly a visionary and lacked the ear of Ahmet Ertegun or Jerry
Wexler and complained that Davis’ tastes ran instead to little more than
“middle-of-the-road.” Seeking
to avoid another long run of ABC-7’s afternoon happy-talk and local coverage,
Chuck brought a paperback edition of a collection of speeches and essays by
Noam Chomsky to read. We
also had aNY Postwith us, which afforded occasional
diversions like Kim Kardashian’s maternity wear.

The effect of the day before was repeated,
when, after an even lengthier wait of 2.5 hours, Chuck’s radiation session
began. Again, he felt
better than he had in days, suggesting the salutatory impact of the day before
had not been a placebo effect, or simple relief. Another happy result: we asked to speak to the resident who
had been the first MD to evaluate Chuck at Weill Cornell, a smart,
authoritative doctor named Desai. The
results from the immunohistochemistry analysis of Chuck’s tumor—tests to
examine particular genetic markers that may help determine prognosis—were
finally available for him to study.

The good news: a genetic marker that predicts whether
or not a tumor will respond to the first line chemotherapy drug for
glioblastoma, Temador, were in Chuck’s favor. Only about 45 percent of tumors
exhibit this marker and Desai was ecstatic when he saw the results. He explained the finding would confer
an approximate 30 percent advantage to Chuck when compared to those who lacked
this marker. It meant,
Desai said, that going forward Temador could be expected to be
effective in killing malignant cells for many months.

(Should Temador become less effective, another
drug called Avastin, a monoclonal antibody that slows growth of new blood
vessels— which fuel tumor growth—may be helpful. Avastin, a.k.a.bevacizumab, has been used in
metastatic colon cancer, lung and kidney cancer, and was FDA-approved for use
in treating recurrent glioblastoma in 2009. After UCLA researchers demonstrated
that year that Avastin improved “response and survival” in people whose
glioblastoma had recurred, Weill Cornell’s John Boockvar, who runs a laboratory
dedicated to conducting clinical trials for glioblastoma, experimentally gave
such patients the drug using a technique to deliver the drug directly to the
tumor site, bypassing the blood-brain barrier. In 2009-2010, Boockvar’s team conducted
a successful Phase I Avastin trial using their new technique in glioblastoma.)

So far, Chuck has been taking an oral dose of
Temador without any obvious ill-effects for close to a week, with one additional week
to follow.

Day Three at the Stich Radiation Center was
mixed. Chuck said he felt
“dazed” after his session with the fencing mask—the “immobilizer”—and the
machine. He was obviously
tired when he arrived home. And
he had one more session to follow on Friday. That session, the fourth, seemed to finally deliver what the medical and radiation oncologists had been warning Chuck about for weeks now: a serious dose of exhaustion. His weekend has been spent resting, sleeping, and resting some more. There are two additional radiation sessions
scheduled for next week, but the chemotherapy continues for another full week. This is a critical period for Chuck; he needs to give these therapies a chance to work and that will be accomplished by bed rest, sleep, and more rest. The next milestone is
likely to be an MRI in the coming weeks to measure the effects of
the treatments described above.

I continue to urge cards and flowers as a
way of expressing solidarity with Chuck at the moment. He’s keeping a list of all who call,
but has difficulty summoning the energy to respond to so many well-wishers. Supportive emails are another option,
but don’t expect an immediate reply just yet.